OP0212-HPR PATIENT ASSESSMENT CHRONIC ILLNESS CARE (PACIC) AND ITS ASSOCIATIONS WITH QUALITY OF LIFE AMONG SWISS PATIENTS WITH SYSTEMIC SCLEROSIS – A MIXED METHODS STUDY
Authors: A. Kocher, M. Simon, A. A. Dwyer, C. Blatter, J. Bogdanovic, P. Künzler-Heule, P. Villiger, D. Dan, O. Distler, U. Walker, D. Nicca
Journal: Annals of the Rheumatic Diseases (2022)

Background Variable disease presentation and symptom burden in patients living with systemic sclerosis (SSc) require a chronic care approach including competent, coordinated, multidisciplinary collaboration as well as self-management support targeting individual patient needs. The Chronic Care Model (CCM) is a longstanding and widely adopted model guiding chronic illness management. 1 Little is known about how CCM elements are implemented in SSc care or how patients’ care experiences relate to health-related quality of life (HRQoL). Objectives First, to describe current SSc care in Switzerland according to the CCM from the patient perspective and examine relationships with HRQoL. Second, to explain these results by patients’ illness and care experiences. Methods We employed an explanatory sequential mixed methods design (Figure 1). First, we conducted a cross-sectional quantitative survey (n=101 Swiss patients) using the Patient Assessment of Chronic Illness Care (PACIC-20) 2 and Systemic Sclerosis Quality of Life (SScQoL) 3 questionnaires. Because PACIC has not been used in the context of SSc, we used the Mokken model to test the construct validity of the PACIC scale and its subscales. After excluding five problematic items, H coefficients were ‘strong’ for the subscales and the global scale (0.52) suggesting a robust unidimensional scale. Figure 1. Schematic of the explanatory, sequential mixed methods design Next, we used data from individual patient interviews (n=4) and one patient focus group (n=4) to further explore care experiences of people living with SSc with a focus on the PACIC dimensions. Results The mean overall PACIC-15 score was 3.0 / 5.0 (95% CI: 2.8–3.2, n= 100), indicating care was ‘never’ to ‘generally not’ aligned with the CCM. Lowest subscale scores related to ‘goal setting/tailoring’ (mean = 2.5, 95% CI: 2.2–2.7) and ‘problem solving/contextual counselling’ (mean = 2.9, 95% CI: 2.7–3.2) (Table 1). No significant associations were identified between the mean PACIC-15 and SScQoL scores. Table 1. Summary of scores (n=101) for the 15-item PACIC scale (adapted version of the original 20-item scale) PACIC mean scores (95% CI ) PACIC 15-item mean score 3.0 (2.8–3.2) 1: Patient activation (mean of items 1–3 ) 3.4 (3.1–3.6) 2: Delivery system design/ Decision Support (items 4–6 ) 3.2 (3.0–3.4) 3: Goal setting/ Tailoring (items 7–9 ) 2.5 (2.2–2.7) 4: Problem solving/ Contextual Counselling (items 12–15 ) 2.9 (2.7–3.2) 5: Follow-up/ Coordination (items 19–20 ) 3.3 (3.0–3.5) Note: CI=Confidence interval; PACIC=Patient Assessment of Chronic Illness Care Interviews revealed patients frequently encounter major shortcomings in care including experiencing organized care with limited participation, not knowing which strategies are effective or harmful and feeling left alone with disease and psychosocial consequences . Patients often responded to challenges by dealing with the illness in tailored measure, taking over complex coordination of care and relying on an accessible and trustworthy team. Conclusion The low PACIC mean overall score is comparable to findings in patients with common chronic diseases. Key elements of the CCM have yet to be systematically implemented in Swiss SSc management. Identified gaps in care related to lack of shared decision-making, goal-setting and individual counselling –aspects that are essential for supporting patient self-management skills. Furthermore, there appears to be a lack of complex care coordination tailored to individual patient needs. References [1]Wagner EH. Chronic disease management: what will it take to improve care for chronic illness? Eff Clin Pract 1998;1(1):2-4. [2]Glasgow RE, Wagner EH, Schaefer J, et al. Development and validation of the Patient Assessment of Chronic Illness Care (PACIC). Med Care 2005;43(5):436-44. [3]Ndosi M, Alcacer-Pitarch B, Allanore Y, et al. Common measure of quality of life for people with systemic sclerosis across seven European countries: a cross-sectional study. Ann Rheum Dis 2018;77(7):1032-38. Acknowledgements We wish to thank the participating patients, the Swiss Scleroderma patient association, and the focus group participants for their generosity and collaboration. Disclosure of Interests Agnes Kocher Consultant of: Pfizer, Grant/research support from: Boehringer Ingelheim, Swiss Nursing Science Foundation, Swiss League Against Rheumatism, University of Basel, Michael Simon: None declared, Andrew A. Dwyer Grant/research support from: Boston College, U.S. National Institutes of Health (U.S.A.), Catherine Blatter: None declared, Jasmina Bogdanovic: None declared, Patrizia Künzler-Heule: None declared, Peter Villiger: None declared, Diana Dan: None declared, Oliver Distler Speakers bureau: Bayer, Boehringer Ingelheim, Janssen, Medscape, Consultant of: Abbvie, Acceleron, Alcimed, Amgen, AnaMar, Arxx, AstraZeneca, Baecon, Blade, Bayer, Boehringer Ingelheim, Corbus, CSL Behring, 4P Science, Galapagos, Glenmark, Horizon, Inventiva, Kymera, Lupin, Miltenyi Biotec, Mitsubishi Tanabe, MSD, Novartis, Prometheus, Roivant, Sanofi and Topadur., Grant/research support from: Kymera, Mitsubishi Tanabe, Boehringer Ingelheim, Ulrich Walker: None declared, Dunja Nicca: None declared